Monday, April 03, 2006

That's what I tell Ryan as we sit in a booth waiting for our fabulous dinner to arrive.

We discuss what I'm thinking about. I'm hesitant, though-- it's been a long time since I've taken on anything new, and I'm just not sure that I can really do it.

"Sandra, any time you've tried to do something, you've been able to master it -- well, anything but diabetes-- but no one has mastered that."

And just like that, it's here.

Ryan seems to read my mind. "But you're right here" he says, holding an index finger and thumb less than an inch apart. "You're in this top percent of people who manage diabetes well."

The lump at the back of my throat almost prevents me from speaking.

"I can't stand this, you know? There's Joseph, and then there's diabetes, and I just can't accept that this thing is really a part of him. I have to keep it separate. I see him, and then I see the disease. It's just not him. It can't be."

"I can't do it like that." Ryan tells me. Then he looks at me with an intensely sad expression, pausing a moment before going on.

"I've accepted that diabetes is part of him. Because if I didn't, then I'd have to keep reliving it and-- " the words catch before he continues-- "I can't do that."

For a moment, I really see how hard this is for him-- how he's managed to cope.

Suddenly, I'm very conscious of the low lights, the loud mass of people that surrounds us-- of the boisterous group of four sitting next to us.

And I'm grateful for the noise, and the darkness.

Maybe no one notices the tears spilling over my cheeks, or my feeble attempts to stop them with my napkin.

We'd promised not talk about the kids, about diabetes. We were going to shoot food at each other if either of us broke that promise.

Aw Sandra .... exchanges like that are hard (especially when there is no food around to fling). My husband and I (on the rare occasion that we get to go out by ourselves) desperately try to not talk about the kids (including Diabetes), bills, debt or any other topic that can raise blood pressure and/or cause depression. But sometimes it just happens.

You know, your post did get me thinking though - I haven't really and I mean REALLY asked my husband how he feels about all of this. I don't know if he accepts the disease as a part of Danielle or as a seperate entity.

I'm like you. There is my daughter - and there is Diabetes. I love my daughter, I do my best to help her grow - nourish her, play with her - keep her as healthy as I possibly can. Diabetes does the opposite.

How can I love that part?? (and I know people see it differently ... maybe I'm just not to that point yet ...)

Thank you for lending me (again) the perspective of parent(s) of a child with diabetes. Having had my own feelings to contend with during the years following my diagnosis, I never properly considered how difficult the disease was on my parents. Even now, my parents worry and fret and do everything they can to be sure I have everything I need to manage the disease well.

I admire you, and your husband -- and the parents of the OC for taking this disease "by the horns," for knowing as much as you can and doing as much as you can -- but especially for shining a spotlight on the inner recesses of your hearts -- giving me a glimpse of the fear and the joy and the challenges of a parent of a child who has diabetes.

That was a beautiful post. I've dealt with my own health problems, but I have always thought it would be another challenge entirely to deal with an ongoing health problem with one of my boys. You have always handled it with grace, at least here, even though you don't hide the difficulties.Thanks, and best to you--

Sandra,I am not sure what to say. I am so sorry that it is so hard and we are with you on every tear. Sometimes I think it is a good thing to have those moments where you stop being strong for everyone else and just be honest and cry. As I have said before, you are an awesome mom and you are doing a wonderful job with your son and with the D. It is definitely an unwanted part of your son as it is mine, I just figure you keep your son close and the D closer, just like friends and enemies. Hang in there, we will beat this! Until we do, we are all in this together. Thanks for sharing your heart.

Sandra-I, too, never really stop to think about the people I love dealing with diabetes. Because it's first hand with me, and I don't live at home, my mom doesn't get the chance to be as involved as you are. But she does try...

And then there's David. What a sweetheart. He has taken on the job of being a diabetics boyfriend. Constantly worrying about lows. Comforting me during the highs. Enduring the mood swings that inevitably come with both. It's a tough job, for the people who love us.

Thank you, for shining a light on your side of diabetes. It really makes me more appreciative for the great people I have on my side.

I am amazed everyday by the dedication parents of D kids have. I often wonder too what my parents go through. Were they grateful that I was old enough to handle the D myself or did they feel completely out of control, since I was responsible for the care and not them?

Then I think, what whould I do if my DD was suddenly Dx'd and I realize, with all my knowledge of D, I don't think I'd have a clue how to help her.

That moment in the restaurant was a hard one-- something I really felt I needed to share.

But the rest of our evening -- believe it or not-- was quite lovely.

And Art-Sweet--

Funny-- when I've made the mistake of telling Joseph that diabetes is just "a small part" of who he is, he's corrected me-- saying instead that diabetes isn't a part of him, but rather just something "really annoying" that he "has to do."

Oh, and Sandra ..... what is this "new" thing that you are wanting to try?? I meant to ask that one in my first comment. (Care to share? Or is it top secret? lol).

And Joseph is right - D is really annoying :)

Glad to hear the rest of your evening out went well - we all need those nights out - away from the kids for a few hours - it always recharges my batteries (although a weekend away would be pure bliss).

I had a difficult time drafting a response to this post because it ripped me from the comfortable role of "the kid with diabetes" and put me in one of the countless moments my parents must have shared. Thank you for the continued perspective of a parent dealing with this disease. And thank you for making your son (and me, vicariously) feel so blessedly normal.

But I think it's great that you and your husband can talk about this and lean on each other. And I think it's great that you can let this be serious and get it out when you need to, but not let it be everything or even most things. I know what it feels like to want to avoid it for a little while or ignore it, but sometimes it does a thousand times more to let it take over for ten minutes. Because then you really can ignore it, afterwards.

I've also struggled with a response. What you've written here has really struck me in two ways. I've finally made a little bit of sense out of my thoughts and put them together as a post on my own blog, which I hope you'll read, although it is only my own thoughts and feelings around what you have raised here.

I should have stopped in with a virtual hug sooner than this, but please take one now.

Thank you for sharing your thoughts and feelings...I can't even imagine what is must be like to be a parent dealing with what you as a parent and other parents have to deal with.

Your feelings struck a chord with me in the sense that I have had my fair share of illnesses/diseases/disorders, etc. and it gave me a bit of perspective on how this must of impacted on my parents and still impacts them now even though I am older.

I couldn't come up with anything to say, other than to add to the virtual hugs. I'm envious of the ability you and your husband have to share in this disease, to talk about it and then to just let it lie. I don't really have that, not like that, and I wish I did.

I really admire you and how you handle things, and I, too, love how you depict Joseph in your writing. He comes across as such a great, calm, together kid. But then, that's how you come across, too, so I guess it's another apple not falling too far.

What struck me most is when you quote your husband "You're in this top percent of people who manage diabetes well." It triggered my own feelings. I would have felt a lot less lonely about the diabetes if my husband felt "We" were the ones managing the diabetes. I've done most of it for 17 years, admittedly having pushed my husband away from the decision making early on and then later feeling resentful that I was the only one doing it all. If I could tell moms of children with diabetes one thing, it's to include the dad in as much of the diabetes decision making as possible. Two giving their 100% with this, would have felt so much more supportive.

You're a magnificent mom and thankfully you take the time to still "date" your husband and set a good loving example for your family.

But unfortunately, with no family in town, and my own fears about leaving the kids with someone who knows little-to-nothing about diabetes, we have few options.

But believe me, if we could, we would-- because not only does it set the example you describe, but (even more important, I think) spending time alone together reminds us that we were -- and still are -- a couple.

Also, you make an excellent point about getting your partner very involved in the diabetes care. There have been times in the past when it felt like I was doing a lot of this alone. When that's happened, I've shared those feelings with Ryan, and it's made a huge difference.

(When Ryan made the statement you quote, he was actually trying to allay my feelings of self-doubt-- though I could see how a different meaning might be gleaned.)

So while I don't talk much about Ryan on this blog (this is actually his choice), he really is a very involved husband and father.

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About Me

I'm a mom of two children-- a 9-year old girl and a 16-year old young man. In addition, I've been vice president of a marketing company; a full-time student (English major); a product services manager for a financial publisher; a childbirth instructor and birth assistant; an aspiring sculptor; and most recently, director of information services and outreach for a non-profit government watchdog group-- in exactly that order.